Getting old very fast

AnneBehymer
AnneBehymer Member Posts: 738 Member
in Ovarian Cancer #1
This is getting very old very fast my numbers are still on a rise (went from 6 to 82)for the past two months. My doctor did a catscan of my chest and stomach and found nothing he said if the number continues to rise he then will have to go looking because the cancer is back in one form or another. My question is what is the magic number when do we go the cancer is back when do we start chemo again to make sure it does not spread even more???
I just need to vent I am starting to get worried about this number going up and I am just waiting to see when he is going to do more than just watching my number.


Love, Hugs, and Prayers
Anne

Comments

  • Kaleena
    Kaleena Member Posts: 2,088 Member
    #2
    PET Scan?
    Hi Anne:

    Sorry your numbers are going up and they can't find anything. Are you able to get a PET Scan? This would show active cancers if they are large enough. But, as you know, insurance companies don't always allow it unless it is deemed in the insurance eyes "medically necessary".

    Your numbers could still just mean that you may have an infection or an inflammation somewhere.

    Great news, though, on your recent scan.

    Hoping your numbers go back to normal.

    Kathy
  • LaundryQueen
    LaundryQueen Member Posts: 676
    #3
    Kaleena said:

    PET Scan?
    Hi Anne:

    Sorry your numbers are going up and they can't find anything. Are you able to get a PET Scan? This would show active cancers if they are large enough. But, as you know, insurance companies don't always allow it unless it is deemed in the insurance eyes "medically necessary".

    Your numbers could still just mean that you may have an infection or an inflammation somewhere.

    Great news, though, on your recent scan.

    Hoping your numbers go back to normal.

    Kathy

    I agree
    You need a PET/CT scan.

    A lot of doctors used to offer chemo when the CA-125 was double the upper limit of the normal range. Now many doctors wait until the patient is symptomatic to allow the longest break from chemo possible. A research study in the UK showed there was no better outcome if the chemo was started early or delayed up to about six months (as long as the patient remained without symptoms).
  • mopar
    mopar Member Posts: 1,972 Member
    #4
    SORRY, ANNE
    I know how tired of this you must be. It happened to me during my recurrance (I'm not implying your situation is the same). Just saying that my numbers were steadily climbing, and not going back down. the doctor finally said he needed to operate (CT scan didn't show anything). There was a small mass - removed it, chemo again, and that was 6 years ago. I see my doctor in March, and I'm hoping I'm still NED.

    Sending hugs and prayers.
    Monika
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    #5
    mopar said:

    SORRY, ANNE
    I know how tired of this you must be. It happened to me during my recurrance (I'm not implying your situation is the same). Just saying that my numbers were steadily climbing, and not going back down. the doctor finally said he needed to operate (CT scan didn't show anything). There was a small mass - removed it, chemo again, and that was 6 years ago. I see my doctor in March, and I'm hoping I'm still NED.

    Sending hugs and prayers.
    Monika

    Monika....your doctor is the
    Monika....your doctor is the exception, I think. Most of them want to wait until you are symptomatic, which I think is just asking for trouble. I like the way your guy thinks, and you are living proof that it's not a bad idea.

    Carlene
  • Mum2bellaandwilliam
    Mum2bellaandwilliam Member Posts: 412
    #6
    Hissy_Fitz said:

    Monika....your doctor is the
    Monika....your doctor is the exception, I think. Most of them want to wait until you are symptomatic, which I think is just asking for trouble. I like the way your guy thinks, and you are living proof that it's not a bad idea.

    Carlene

    Hi.
    I haven't been on here for a while , there seems to be lots of newbies which is crying shame :(
    I agree that it is better to wait until you have symptoms,. When I first heard this , I thought it just doesn't make sense surely the less there is to kill off the better? However the longer you can between each chemo drug the better as well. I also couldn't imagine sitting back and waiting for the symptoms to appear, it must be torture.
    There was a Study done on this and it showed women who waited until they had symptoms to get treatment actually had better overall survival time!
    Cancer has no logic , it seems this is just crazy ! However the study shows it to be true! I think the study was led by a professor Rustin, you may want to look into it.

    Good luck xxx
  • Mum2bellaandwilliam
    Mum2bellaandwilliam Member Posts: 412
    #7
    Hissy_Fitz said:

    Monika....your doctor is the
    Monika....your doctor is the exception, I think. Most of them want to wait until you are symptomatic, which I think is just asking for trouble. I like the way your guy thinks, and you are living proof that it's not a bad idea.

    Carlene

    Hi.
    I haven't been on here for a while , there seems to be lots of newbies which is crying shame :(
    I agree that it is better to wait until you have symptoms,. When I first heard this , I thought it just doesn't make sense surely the less there is to kill off the better? However the longer you can between each chemo drug the better as well. I also couldn't imagine sitting back and waiting for the symptoms to appear, it must be torture.
    There was a Study done on this and it showed women who waited until they had symptoms to get treatment actually had better overall survival time!
    Cancer has no logic , it seems this is just crazy ! However the study shows it to be true! I think the study was led by a professor Rustin, you may want to look into it.

    Good luck xxx
  • Kaleena
    Kaleena Member Posts: 2,088 Member
    #8
    Hissy_Fitz said:

    Monika....your doctor is the
    Monika....your doctor is the exception, I think. Most of them want to wait until you are symptomatic, which I think is just asking for trouble. I like the way your guy thinks, and you are living proof that it's not a bad idea.

    Carlene

    Symptoms Etc
    You are right, Carlene. Most doctors now want to wait until you have symptoms. I was just recently told by my doctor when I asked if I needed a scan (I had been getting them every 6 months and I am possibly losing my current insurance as of April 1st) and he said that they now have to follow the new guidelines and can only give scans once a year (unless of course there are symptoms). Heck, I couldn't even get a PET scan when the doctor ordered it because the insurance company refused! Go figure!

    I was a bit concerned about this but then as I have looked back through my initial diagnosis and treatment, no scans (CT, CT/PET, PET, MRI, Barium Enima, Ultrasound, Colonoscopy, etc) that I had never showed anything. It was through my persistance because of symptoms that I was having. Then recently (2010) I had a positive biopsy, had surgery to remove it only to find out the tumor was negative. I am so confused!

    Regarding symptoms. The bad thing about reporting symptoms is that if you are like me, sometimes we ignore symptoms because we think that they are not relavant. Or we downplay the significance of a symptom or not quite tell the doctor exactly how it is. Or if we do, the doctors sometimes brush it off as sometime normal. We can go on and on about this. OK, heres another point, could a "feeling" be a symptom? You know,that feeling of something not quite right and/or things not working as they usually do. There are times when we feel things that just can't be described.

    At my recent check-up in December, I had been having a slight pain in my left back at the base of my ribs. I started to tell the doctor and my husband jokingly said something that I am a worry wort. The doctor looked at my husband and told him she needs to tell me of these things no matter how small it is.

    For me, I think it should be up to the patient, especially if we have been diagnosed, received treatment, etc. Every patient is different and has different circumstances. In fact, sometimes they treat you for something in a general catagory because the doctors can't determine exactly where it started, etc. We need to find a happy medium here that will make it less stressful for the patient. But then this will be stepping on the insurance companies. Yikes!

    Thanks for letting me rant. I hope I don't sound too confusing.

    My best to all. Hope everyone is having a great day.

    Kathy

    {stormy day here in Pennsylvania}
  • AnneBehymer
    AnneBehymer Member Posts: 738 Member
    #9
    Kaleena said:

    Symptoms Etc
    You are right, Carlene. Most doctors now want to wait until you have symptoms. I was just recently told by my doctor when I asked if I needed a scan (I had been getting them every 6 months and I am possibly losing my current insurance as of April 1st) and he said that they now have to follow the new guidelines and can only give scans once a year (unless of course there are symptoms). Heck, I couldn't even get a PET scan when the doctor ordered it because the insurance company refused! Go figure!

    I was a bit concerned about this but then as I have looked back through my initial diagnosis and treatment, no scans (CT, CT/PET, PET, MRI, Barium Enima, Ultrasound, Colonoscopy, etc) that I had never showed anything. It was through my persistance because of symptoms that I was having. Then recently (2010) I had a positive biopsy, had surgery to remove it only to find out the tumor was negative. I am so confused!

    Regarding symptoms. The bad thing about reporting symptoms is that if you are like me, sometimes we ignore symptoms because we think that they are not relavant. Or we downplay the significance of a symptom or not quite tell the doctor exactly how it is. Or if we do, the doctors sometimes brush it off as sometime normal. We can go on and on about this. OK, heres another point, could a "feeling" be a symptom? You know,that feeling of something not quite right and/or things not working as they usually do. There are times when we feel things that just can't be described.

    At my recent check-up in December, I had been having a slight pain in my left back at the base of my ribs. I started to tell the doctor and my husband jokingly said something that I am a worry wort. The doctor looked at my husband and told him she needs to tell me of these things no matter how small it is.

    For me, I think it should be up to the patient, especially if we have been diagnosed, received treatment, etc. Every patient is different and has different circumstances. In fact, sometimes they treat you for something in a general catagory because the doctors can't determine exactly where it started, etc. We need to find a happy medium here that will make it less stressful for the patient. But then this will be stepping on the insurance companies. Yikes!

    Thanks for letting me rant. I hope I don't sound too confusing.

    My best to all. Hope everyone is having a great day.

    Kathy

    {stormy day here in Pennsylvania}

    Just what I needed
    You all really did help we need to be heard at the doctor and sometime it is just a feeling that some thing is not right. I have been saying for a couple of months that I just did not feel well that something is wrong and I just don't know what it is. I did get a note from my doctorers office they want me to make an appointment to talk further about the numbers rising. Thank you so much Ladies for everything you said and for your support. I know something is not right and I was just feeling like no one was listening to me. I will keep you updated on what I find out from the doctor.


    Much
    Love, Hugs, and Love
    Anne
  • lovesanimals
    lovesanimals Member Posts: 1,366 Member
    #10
    AnneBehymer said:

    Just what I needed
    You all really did help we need to be heard at the doctor and sometime it is just a feeling that some thing is not right. I have been saying for a couple of months that I just did not feel well that something is wrong and I just don't know what it is. I did get a note from my doctorers office they want me to make an appointment to talk further about the numbers rising. Thank you so much Ladies for everything you said and for your support. I know something is not right and I was just feeling like no one was listening to me. I will keep you updated on what I find out from the doctor.


    Much
    Love, Hugs, and Love
    Anne

    Dear Anne
    So glad (but not surprised) that the other ladies have provided you with good advice and information, which I will store away too for future reference. Sending you good thoughts and prayers as you await your doctor appointment.

    Kelly
  • AnneBehymer
    AnneBehymer Member Posts: 738 Member
    #11
    lovesanimals said:

    Dear Anne
    So glad (but not surprised) that the other ladies have provided you with good advice and information, which I will store away too for future reference. Sending you good thoughts and prayers as you await your doctor appointment.

    Kelly

    thanks Kelly

    thanks Kelly

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